Dementia in the minds of characters and readers

One of the most rewarding aspects of reading a novel is the experience of seeing the world through the eyes of a character, especially when it offers a new or unusual perspective, known as 'mind style' in literary linguistics. This is the first comprehensive mind style analysis of dementia narratives, including Elizabeth is Missing (Healey 2015), The Corrections (Franzen 2010), The Wilderness (Harvey 2010) and Still Alice (Genova 2007) amongst others. Because of the wide-ranging ways dementia can be experienced and depicted, this project will push the boundaries of the mind style model, developing its scope and analytical power.
However, this project also investigates how literary language depicting the minds of characters with dementia can provide a 'way in' to understanding a socially stigmatised condition associated with loss of personhood. Some might argue that fictional representations of dementia have little relevance to real experiences: our contention is that dementia is different for everyone, so there is no 'real' means of measuring representative accuracy, nor should fiction conform to 'reality'. Indeed, fiction is unique in the way that it lets us access the workings of other peoples' minds so closely. To illustrate, we offer a short vignette of how Jonathan Franzen, in his award-winning book The Corrections, uses mind style to take the reader inside the mind of Alfred, a character with dementia:
Alfred was standing in the master bedroom wondering why the drawers of his dresser were open, who had opened them, whether he had opened them himself. He couldn't help blaming Enid for his confusion. For witnessing it into existence. For existing, herself, as a person who could have opened these drawers.
Alfred's confusion and agitation is iconically represented in the listed questions 'wondering why...who...whether...'. The use of repetitive, speech-like, 'live' sentence constructions 'for-, 'for-', 'for-', involves us in Alfred's search for blame. In our pilot study (Lugea et al 2017), we asked participants in a Reading Group to listen to a longer version of this extract, underlining features of interest, completing a short questionnaire, and engaging in a group discussion. A participant living with dementia reported, 'this is my life' and other readers reported feeling as if they had access to Alfred's thoughts and experience. This vignette illustrates a major advantage of using literary representations of dementia: fictional mind styles allow us to show, rather than tell people what it is like to experience dementia.
Our project uses fictional extracts which display features of dementia mind styles to explore the potential of fiction to unlock deeper understanding and empathy towards people with dementia. The Reading Groups will include:
1. people in the early stages of dementia
2. caregivers
3. social work/policy students
4. the general public
The readers' responses will inform our analyses of the fictional texts, developing the mind style model itself and providing further empirical insight into how real readers interact with fictional characters.
The findings will be shared in academic, social policy and cultural settings. We will publish a booklet to be used in ongoing dementia training and support. The project will culminate in a Dementia Fiction Festival, celebrating the boom of fiction on the topic and contributing to the growing public awareness of the condition. The texts analysed, as well as works from local and international authors, will be showcased through live readings, performances and screenings. With the support of dementia charities, the events will be dementia-friendly, giving people living with dementia a rare chance to engage in directly-relevant cultural activities. Ultimately, we provide a method which could be replicated to improve cultural understandings and empathy towards dementia in other contexts, and similar illnesses in any context.

This research engages key stakeholder groups in reading fiction depicting the world-view of characters with dementia, a method replicable in other contexts and with other cognitive impairments. Based in Northern Ireland, the findings will be relevant to any of the 46.8 million people living with dementia globally (Alzheimer's Disease International 2015). The impact is much wider when we consider that the disease effects family members, friends, carers and - socio-economically - society at large.

People living with dementia
People in the early stages of dementia, who are often less catered for in arts therapy (Beard 2012) will use the fiction to discuss their lived experiences in Reading Groups. As Canning shows (2017), Reading Groups give a voice to marginalised people, having a cathartic psychological impact. Like previous research (Billington et al 2013), our project can demonstrate the impact of literary interventions on people living with dementia in relation to their symptoms, quality of life and wellbeing. Addressing the 'social death' (Brannelly 2011) that people living with dementia have been said to suffer, the project's series of outreach events will be as inclusive as possible, thus positively impacting on the social inclusivity of the cultural scene in Northern Ireland.
Informal caregivers and health professionals
Given that there are 700,00 people in the UK caring for a loved one with dementia (Alzheimer's Research UK 2015), this research is highly relevant to those caring friends and family. Although carers are advised to put themselves 'in the shoes of' a person with dementia during training (Alzheimer's Society 2017a), there are no specific methods on how to do this. The Reading Groups' inclusion on the Training for Informal Caregivers (TrIC) programme will introduce carers to the fiction, encourage them to take the perspective of the characters and, in turn, facilitate empathy, impacting on their understanding and the quality and level of care they provide. The booklet will be available for dementia charities to use in supporting staff and service users into the future.
The Reading Groups with social work/policy students will use fiction to lay bare core symptoms of dementia and encourage empathetic and professional engagement. The research will inform the development of interdisciplinary teaching materials for Queen's University undergraduates, including programmes in Social Sciences and on a module 'New Questions for an Ageing World', as part of our new Liberal Arts degree.

Public/policy/third-sector
The research findings will be presented at a masterclass for British Society of Gerontology in Northern Ireland, which has mixed public/policy/third-sector audiences. Through ARK Research Updates and a Knowledge Exchange Seminar to the Northern Ireland Assembly, the research findings will also reach policy-makers in the region. To ensure long-lasting public benefit, these resources will be freely available on the ARK website for five years after the project start date.

General public
There is already a 'dementia boom' in popular culture, but this project develops that into deeper awareness through selection, analysis and dissemination of the fiction and the findings. Research findings will reach a public audience through events as part of local and international programmes, as well as our Dementia Fiction Festival. There is a high level of fear about dementia amongst the public, with very little accurate information about what the condition actually involves. Fiction will act as an important starting point for translating this fear into a more socially acceptable understanding of dementia.

Creative writers
The Dementia Fiction Festival is a means to promote the work of creative writers, local and international, having an impact on the artists' visibility. Moreover, the research findings will be shared through a workshop with creative writers, impacting on literary practices.